Tuesday, March 6, 2012

Love In The Time Of Viraemia. A Thank You Note to Sungai Buluh Hospital and the Selangor State Health Department.

A view from Sungai Buluh Hospital's ID Clinic. -taken with Hisptamatic for iphone-

Prologue.

“I have been admitted to the hospital,” I croaked weakly into my phone. I had just fainted at work, with a buzzing sound in my left ear and intermittent weakness on the right side of my arm and leg. I could hardly stand up, my head spinning around as if I had too many shots of Tequila. This was in 2007, and I had called Adam.

“What? What happened?” Adam asked anxiously.

“The Doctors think I have had some kind of stroke and they are arranging for an emergency MRI now.”

“Oh My God! Where are you?”

“Sunway Hospital.”

“I’m coming now!”

Adam was the only person I called throughout my stay at Sunway. He came immediately as promised, relieved my apartment keys from my Driver, and came back with my cellphone chargers, two half read books I had left on my bedside table, my sarong and undergarments, my beloved Spiderman T’s, my plush Egyptian Cotton bath sheet, a bottle of Anteus and toiletries from my bathroom. In short, everything I needed to survive an ordeal in the Hospital. All this happened while I was having my 2 hour long MRI, without me having to tell him anything. It was done instinctively because I never told him anything that personal about my life before.

What would you do if life just dealt you lemons? -Vegepai, taken with Canon 550D-

I was discharged after 3 days, after being prodded, poked, scanned, echoed, referred by the Neurologist to the Ophthalmologist, the Cardiologist and the Rheumatologist. I had vasculitis of my cerebral arteries, but nobody could tell me why. Blood Pressure was borderline, Biochemistry was normal and all the tests were normal except for a through the roof Rheumatoid Factor levels.

Me and Adam, our friendship can be labeled as dysfunctional. One which blossomed amidst Hospital stays and trying circumstances. A friendship that grew stronger under the cold, bright glow of fluorescent tubes, pungent disinfectant, flurry of white uniforms and a constant reminder of our impermanence amidst disease, death and decay. Life slows down lying on a hospital bed. We opened up to one another undistracted by the barrage of calls and emails which will assail us other wise. We talked about our failures, our hopes, our dreams and snuck out after removing the infusion pump that propelled a steady dose of heparin into my circulation to have some clandestine nicotine beyond the hospital compound.

Sesame Covered Kuih Bakul from Gu Yue Tien -taken with Canon 500d-

Paradise Lost.

A year before, in 2006, he had called me up after a night of binge drinking complaining of severe abdominal pain and asked me whom he should consult. I dropped whatever I was doing and drove him to the nearest clinic. His stomach was very tender and the Doctor noted that his Blood Pressure was slightly lower. He immediately referred him to the hospital, and being in Kepong an unfamiliar terrain for me, I opted for Sungai Buluh Hospital as it is the nearest.

Armed with a letter to the Emergency Room Physician, I drove up to the Emergency Unit of the then spanking new hospital. A Medical Assistant manning the counter outside the ER read the letter, without as much as glancing at Adam, refused to register Adam at the ER and directed us to the Outpatient’s Department. He said the case was not an emergency, despite a letter written by a Doctor with more than 30 years experience running a successful practice saying otherwise.

We drove off to the Outpatient’s Clinic, dropped Adam off at the entrance with his fiancee and tried searching for an available parking space. At the registration counter, Adam was looking very pale and had cold sweats. The Nurse at the counter looked at the referral letter and looked at him. She was shocked. She told us that Adam was way too sick and is about to collapse soon. She quickly got a wheelchair for us and said that he must be seen immediately at the ER.

Sunrise along the East Coast highway -taken with Canon 550D-

Cerberus was there again, guarding the gates of Hades. Again he glanced at the letter and as Adam’s fiancee, Eve, tried to remove a wheelchair from the entrance to wheel it to the car, she was reprimanded. Cerberus said wait. He has not finished reading the letter. Eve shouted back saying that Adam was very sick. I asked Cerberus politely if it was Adam or the letter that was in risk of suffering from impending circulatory collapse, that he was spending too much time reading the same letter he had read just 20 minutes ago, and suggested that he descended from his mini throne to examine Adam instead.

Cerberus got mad, and started barking. Disgusted and extremely worried for Adam, we decided to speed off immediately to PJ for treatment at a Private Facility. There were enough F bombs in my car that afternoon to nuke an entire episode of Hell’s Kitchen. At the Private Hospital, Adam was immediately infused with some colloid expanders and a diagnosis of Bleeding Peptic Ulcer was made. He was transfused with 4 pints of blood and an Endoscope done two days later confirmed the diagnosis.

I contacted the Hospital to lodge a complaint and made a call to the State Medical Services Department. Persnickety Me followed up with a fax plus a copy of the referral letter. Dr Ang, the Deputy Director of State health Services then, promised that she would keep me followed up but the promise was not kept. We carried on with our routine forever filled with a bitter memory of Sungai Buluh Hospital. There is nothing more exasperating than to be on the verge of death, arriving at the door for treatment and refused entry, knowing that all the resources that can make you fell better immediately was just 10 feet away. A pity, really because the structure was impressive and the surroundings green and pristine. As in big Acronyms and promises of transformation, all the best intentions are thwarted by unwilling foot soldiers.

I have known Adam for 13 years and ours was not a friendship at first sight. He was everything I wasn’t. Loud, verbose and extremely sociable with a penchant for women and wine. That was until he found Eve, a no nonsense disciplinarian who managed to tame Adam's excesses. He and his business partners were thinking of expanding in 2005, and I was approached to write a proposal for them to obtain further funding for their fledging business but was told outright he wold not be able to pay me outright. I obliged not because I liked him, but I needed some distraction from my ailing mother and messed up personal life. Writing Business Proposals was not how I earned a living anyway.

When I relocated to KL in late 2006, he looked me up, bringing along a thick wad of cash to repay me. I refused it saying that the work done was gratis and I have already forgotten about it. He insisted and said that business had been extremely good since the cash injection and asked me if I wanted a share in the company instead. I again refused and laughed and told him to donate the money to my favourite charity. It was during his stay in the hospital that I truly got to know him and Eve and became firm friends, meeting up whenever time allowed.

Adam and Eve got married in 2008. I was not invited to the wedding, because he knows I hated big crowds, the fuss and ceremony. Instead, he threw a small dinner for me and introduced me to his parents and in laws. The following years have been good to them. They shifted to an envied post code and drove around in a German marquee, had a daughter in 2009 and moved up the middle class dream.

Turbot from Millisime -taken with Canon 550D-

The Villain.

“Can you come tonight? I have something to discuss with you.”

“Drats. I have a long day. Can we talk over the phone? Otherwise, it has to be very late,” I replied tersely distracted by my ringing mobile phone.

“OK. Whenever you are free. Please drop by. It’s regarding Eve.”

Eve was pregnant with their second child in 2011 and Adam sounded strained. I grudgingly cancelled everything for the afternoon and evening. The effort took more than 30 phone calls, 2 hours and a bad headache.

When I arrived, their home was abnormally quiet and still. The evening traffic and it’s occasional honking downstairs seemed loud against the background hum of air conditioning. These sounds have never been associated with their home, which is usually filled with voices murmuring and laughter plus the sound of TV playing in the background. Eve was sitting in a corner hugging their daughter. She did not look at me when I entered the living room. My heart sank. This had to be bad.

Adam handed me a piece of paper. It was Eve’s lab report.

Flower outside Cilantro Deli -taken with Canon 550D-

HIV ANTIBODIES ELISA TEST: REACTIVE

My eyes must scanned through that sheet about a million times, each time wishing that I have misread and hoping for a miracle, for 3 magical alphabets to appear before the word reactive. The elusive Monosyllable. NON. I felt giddy. I couldn’t say a thing.

The roar of an avalanche followed by a chilling calm.

It took me about 5 minutes to regain my composure. Let’s do a repeat test and a Western Blot to confirm the diagnosis, I said. Sometimes, pregnancy itself causes a false positive ELISA.

Eve was referred by her Gynaecologist to Sungai Buluh Hospital. My heart sank. Bitter memories of our virginal experience there resurfaced. I called Eve’s Gynaecologist immediately but I was reassured that Sungai Buluh's Infectious Diseases Team was the best in town and it would be in Eve’s best interested to be seen there.

L'Aveline from Les Deux Garçons -taken with Olympus EPL-2-

Paradise Regained.

Not wishing to delay treatment for the baby who was in Eve’s womb, we rushed to Sungai Buluh Hospital to make an appointment. It was a trip made grudgingly under duress.

The Infectious Diseases Clinic (ID Clinic) was busting its seams when we arrived. There were matronly aunts with anti-gravity coiffure and thin bald young men with shaven heads. Screaming kids watched over by their harassed mother accompanied their grand fathers in wheelchair. The air was thick with hope, expectation, fear and acceptance.

Every patient at the clinic was seeking a cure for the travesty of having their health violated by microorganisms. Tuberculosis and Leprosy bacteria with it’s fortress like walls. The HIV virus, which is composed of simple strands of protein. It hardly can be hardly classified as a living organism but is able to trick the host’s cells into producing more strands of viral proteins. The perfect enemy which kills its host as it commits a defiant hara kiri.

Mushroom Sandwich from Cilantro Deli -taken with Canon 550D-

We were expecting the nurses manning the clinic to be sullen and curt, but were instead greeted courteously with a smile at the counter. The Nurse said that Eve would be seen immediately because of her pregnancy. We were prepared for a long wait. Cellular network coverage was sparse. I was temporarily disconnected from the internet and the outside world.

The generally despondent mood of clinic was elevated by the calm nurses directing the patients around the maze of consultation rooms, blood drawing rooms and treatment rooms. One nurse in particular stood out, she spoke with a lisp and probably had some palate repair surgery before. She noticed that Eve was pregnant and asked if Eve was tired or hungry and wanted to have a quick lunch at the canteen. She would watch out for Eve’s queue number and hold it until Eve comes back.

I was extremely touched by this little gesture of empathy. Whatever misgivings I had about Sungai Buluh Hospital vanished and paradise has been regained.

Details from a flower at Lancang R and R on East Coast Highway -taken with Canon 550D-

Angels and Archangels.

We finally got to see Dr. Maslisa, the infectious diseases specialist at about 1:45 PM. She had been working through lunch and I had foolishly arranged a meeting with clients at 3 PM and was a bit irritated by then. She was what we envisioned as an angel sent from heaven to give us hope in an otherwise calamitous landscape wreaked with fear, desperation and hopelessness.

Calm, knowledgeable and courteous she was empathic to my friends and went into great detail about what the disease was all about, and prepared us for what to expect. She emphasized on the importance of keeping a disciplined dosing schedule and which side effects to anticipate. She consoled my friends and prepared them for what will be a long journey and reassured that the current cocktail of anti retroviral drugs were very effective and that they would be looking forward to many, many years ahead with proper medication and monitoring.

Bearing in mind that it was well past lunch hour, we really appreciated her dedication to her vocation. Vast knowledge alone does not make a great doctor. She also had a very special gift, the ability to put patients at ease and also able to convey all the important messages firmly yet instill hope and exude warmth and empathy.

Bread selection from Millisime -Taken with Canon 550D-

We have met a very special doctor that day and received excellent and dignified treatment from the staff at the ID clinic. I wrote an email to thank the Hospital Director and included the Selangor State Director of Health Services as a recipient of the mail. Within 2 hours, I got a personal reply from Dr Azman Abu Bakar, the State Director himself, thanking me for the feedback.

There was a great transformation at Sungai Buluh Hospital and I am sure it is due to the efforts of both the administrative and clinical staff, and it wasn’t surprising at all, seeing that the State Director himself leads by example.

Malaysia’s leaders are looking for a way to transform the country, and if they wish to remain true to their objective, they should just look at Sungai Buluh Hospital and the Selangor Health Department. Forget about big acronyms, forget about appeasing the fat cats and warlords with cash. What we really need is a big dose of empathy and encouragement, plus leaders who are really committed to improving the services and are really dedicated to their resolve of putting the welfare of others before themselves.

Salmon Sandwich from Cilantro Deli -taken with Olympus EPL-2-

Epilogue

This story does not have a happy ending yet. Adam has been tested positive and their first daughter who was breast fed until Eve got pregnant has also been tested positive. The newborn is currently on antivirals pending confirmatory tests. I had explained in the previous that I have been very busy, too busy to blog. This is the reason.

It is not easy keeping so many appointments with the doctors. Not that I can be of much help, but I just want to be there when they get their test results, to be there during times of recrimination and anger. I try to console and encourage and try to remind them to honor appointments made with the Doctors despite their exacting schedule and also lethargy from the side effects of their medication which includes nausea and vertigo. I am sure millions of other people would be capable of doing more than what I did for a them as a friend.

Flying Dragon Fish Yee Sang from Gu Yue Tien -taken with Canon 550D-

A Digression.

I am not a perfect friend, nor do I pretend to be one. I have too many eccentricities and hang ups to function as one. Those who know me will know that I have more vices than virtues and impatience is one of them. I have also blogged a few months back that I have decided to drop some friends due their inability to respect my time, being limited enough as it is. There is a little piece at TMI that caught my attention. I disagree with the views of the author because I am one of those who with a little bit of contemplation, would remove contacts from my BB, twitter, email and social networking sites. I am ruthless at that.

First of all I do not take my “friends” at social networking sites seriously, unless I have had a meaningful conversation or met them personally. And if I decide to delete or unfriend you, it is usually because I feel you are an irredeemable failure at being a friend.

One should never work at being a friend, it should be natural and effortless. It should be accepting your friend’s faults and not just tolerating them. I can’t accept time wasters. Get on with life and grow up. As for hating my enemies because you are my friend, don’t insult me. I can fight my own battles. That is not a sign of friendship. At best, it is psychotic. But in most cases, it is just drawing attention to yourself and to the fact that you have nothing better to offer at being a friend.

Seared Scallop from Opika. -taken with Olympus EPL-2-

The world out there is filled with deluded people who think they make good friends and should never be dumped. What they really need is to take a good look at themselves in the mirror and give themselves a good reality check. Somebody unfriends you on Facebook and it's the end of the world? Call up other friends to ask for advice? Act like a kindergarten kid who complains to teacher that little Thomas doesn't want to be friends with her? Life is too good to you. Hey, there are Billions of people out there who have much bigger problems, and if you are that desirable as friend, it's their loss and not yours. Somebody does not want to befriend you because you acted like an ass wipe and couldn't muster a proper apology? Fine. Go around whining about how uncommunicative people are nowadays and not being able to talk about problems.

The good “old fashioned” way of talking over a problem only works when there is a semblance of friendship to salvage and not to satisfy a bruised ego. To talk to a fifty year old about basic courtesies like respecting other people’s privacy and time? You are right that it is too much work. That is not working on friendship. It’s psychological counseling. Go get professional help.

All of us have different notions of friendship and sometimes when these notions collide, it is time to call it a day. For instance, some friends would require you to divulge all your information about yourself to them. They would not understand why some friends get to know your birthday or your office address and others don’t. It took Adam 6 years before I was comfortable enough to allow him into my house and knowing me for 6 months doesn’t accord you that privilege. To me that is my prerogative and it’s my own personal decision. We are just sharing a dining table and not my bed and friends should respect the boundaries I set until I feel that it is time for them to be privy to certain personal details about my life. Friendship should never be based on presumptions, and certainly not on notions of friendship based on sitcoms and TV shows.

I have absolutely no regrets for deleting people from my BBM and Twitter timeline when they cross a certain threshold. Can't get the drift and still want to whine? Fine. I tried to be subtle, now I'll say it out loud if you are really that dense. “Sod off, and go waste some other people’s time.” I have better things to do with mine.

Eggplant Salad from Erawan. -taken with Canon 550D-

Love in the time of viraemia.

Until today, I have not tried to discover where the infection was from. It must have been sometime between the conception of their first daughter until the second pregnancy. Adam and Eve passed their prenuptial blood test and Eve tested negative while conceiving their first. It does not matter to me because whatever it is, their life has changed forever. It is heart wrenching for me as a bystander to watch the unfolding events and how the virus has affected their child and totaly turned their life upside down.

My leisure time used to be filled with literary books but now it is filled with books on immunology and virology. There is no more time for lazy afternoons filled with magical realism. Instead it is filled up by dealing with facts to arm myself with enough knowledge to understand what is going on in my friends' body as they try to stave off the virus. Thanks to our recent encounters with healthcare providers at both the Infectious Diseases Clinic and Paediatrics Clinic of Sungai Buluh Hospital, I know that they are in good hands and for this I am forever grateful.

Homeless man along Jalan Tunku Abdul Rahman -taken with Canon 550d-Malaysia is filled with people who will fight for the dignity of an omniscient, omnipresent and omnipotent supernatural being. Where are the voices for those at the finges of society? The homeless, the infirm, the oppressed and those infected by HIV?

I have over written as usual, and to those who read this post to its completion, I thank you for you indulgence in listening to me rant. I would just like to end this with a note on the title of the post.

One book struck my mind when these events unfolded. Love in the time of Cholera by Marquez. This is a breathtakingly complex book and dissects love with passion and insight, right down to the core. Love is always described as eternal. What happens when the promise of eternal love is confronted with the finiteness of human life, when it is confronted with age, disease and death? It is a very relevant book as more people are inflicted with the HIV virus by the day.

Adam and Eve remains a loving couple despite their tribulation and I could imagine them holding hands and sailing up and down the Magdelena River against the backdrop of a magnificent sunset. Just like an aging Florentino and Fermina did, discovering their love after 51 years, 5 months and 4 days, and doomed to stay onboard a ship forever after being quarantined aboard as people infected by Cholera.

Note: The characters and events are non fictional, but I have taken some liberties as needed to protect their identity.

After reading your stream of unfolding events, i am all but empathetic about your friends battle with the virus instead i am fumed with angst and despair at how the past would befall irreparable consequence on the future generation.

Akin the pain and suffering one fails to acknowledge the difficulties of growing up with a disease that bears and drains the force out of a seed that thrives on nurture and care.

I acknowledge the past can unfortunately not be reverted and status quo is but a dream. I wish to allude to you to further study on how viruses survive on the essence of carboh. strains and how taking some coconut oil and eliminating sugar/grains/and even fruits can help.

Please bear in mind I am but a vacuous student of life onli in the midst of my twenties hoping that the future is optimistic for little ones and do ensure rigor is encapsulated in his life to preserve the other precious one from any infection. I wish not to promote malice or any negativity on what is already overbearing on your friend or yourself but please do look into the suggestions with an open mind.

Thank youfrom an avid reader who enjoys your occasional splurge and flamboyant dining exquisite. And i wish u strength and vigor to be the pillar of your friend as the battle is strenuous but with support and encouragement, hope is fledging not begone, supplement by faith and belief one surmounts hills and mountains. Pardon my poor use of language n grammer as it is but adlib

@Michelle I am sure you will make a very good friend. You are enthusiastic, opinionated and passionate. You probably haven't got the chance to prove your mettle yet. Time will show that you will be able to rise to the occasion and your fortunate friends will truly appreciate you for what you are.

@J Thanks, J. You are always such a sweetie. My only regret is not being able to spend much time with you dining and chatting as we did previously due to time constraints. My friends unfortunately have not chosen to revel their illness to their family due to the stigmata of the illness.

It is just me and another friend who must provide them with whatever support we can offer. Thanks, dear. I will convey your wishes to Adam.

@Contrarian Thank you for your input and suggestions, and thank you for the positive thoughts. I noted from your Blogger profile that you are a student. I wish you all the best and a bright, successful future.

I thank you for ur wishes and i hope that you could provide me some insight of the effects if Adam does use coconut oil. As i grew up with the burden of allergies and dogged by constant sickness i am aware of the impediments that ensues... feel free to drop me a mail zclee1987@gmail.com if you wish to read more into coconut oil :) gladly forwards some American medical research conducted to u :) Would love to personally meetup with you if i am not in Perth atm... just that a change in lifestyle combined with coconut oil has alleviate my symptoms and would love to be of some help (note:"some" as what i experience is of a different scale and magnitude)

As with any good story, the reader holds out till the final paragraph is written, waiting for that ray of light to break through the clouds of gloom and dispair. You are such a good friend - you are that ray of light!

PS - am so happy to read the update on FB that the baby is fine:) xoxo

You're a good friend bro. One of the many few whom I've met through blogging. Nobody is perfect bro, but we do what we can. God only knows how you've helped me pull through some recent difficult times.

people call me up and say, hey, we haven't met for a while, let's hang....

we agree on a time and a day. and then they say, oh please let's go to a place where it's quiet and we can hear ourselves talk, we have lots to catch up on...

my heart feels warm and fuzzy.

when the day arrives, i wonder why they're lugging such a big bag. but we're good friends, so the question is silent.

after hugs have been exchanged and the orders are taken, out come the ipad, the plastic folders, the stack of flyers....and the real intention of the meeting is revealed...

hey, they say, you still working for X? ever thought about becoming your own boss? i know of this product, great for your health, i sold a few thousand and now the wife and the kids, they're going on overseas trips with me....we were in Disneyland last week...was in Paris the month before...rewards for meeting my sales targets, you know....it's easy....you just need to get one or two friends involved and then everything takes off!...you've been such a good friend, i thought i wanted to share this great opportunity with you....here, take a look at this presentation....

at this point, i blank out...

these days, real friends, the ones who drop everything to be with you in your hour of need or even just for nothing, are rare and getting rarer.

why so cynical? when you've had a few chats with people who ask to meet at "someplace quiet where we can have a really long cozy chat" and it turns out to be anything but, you start building that shell that keeps all but the best outside.

so PA, you're right. keep those who deserve to be there. those who make time for you even when you can't do the same.

I wish to thank all of you for your kind wishes for my friend Adam and for taking the trouble to read my extra long post.

@Ciki : Muaaaaaaks. You are such a sweetie. Sorry I have been a little distant lately.

@Unkaleong: I don't think I have done much for you but you have also been there for me many times. *hugs*

@TC: Thanks, my friend. Hope things are well for you.

@flux: How true. The scenario you describe rings true for many of us and somehow the greed and materialism is so pervasive and it amplified by the cost of living in a big city. Thanks for writing such an elaborate comment. Though I have not met you before, I feel like I know you somehow. LOL... Maybe we are kindred spirits. Lots of warm wishes from me to you.

I came across your post today while looking for food bloggers. I'm not sure if you are still blogging at this point in time, since you mentioned that most of your time is now dedicated to helping Adam and Eve. It takes a special kind of person to want to dedicate that much of a time to helping his/her friends, and I feel that Adam and Eve are very lucky to be able to depend on you at this point in their life.

As for friends, I cannot agree more with what you have said. These days, I will not hesitate to delete off anyone that I feel have been taking advantage of me and my feelings. If a friend really needs me, I will not hesitate to come and meet them and cheer them up if needed. Somehow, things are never like that when it's my turn to have someone around. "Work gets the best of me", they say... or "Hmm.. can't promise anything, not sure when I'll be free". As if they are the President or Agong of Malaysia. Maybe it sounds very selfish of me, but I do not demand a lot. Half an hour or so is really enough for those who are swamped with work like you.

So now, my resolution for this year is this - true friends will always find some time for you. If they can't do it today or tomorrow or next week, they will do it next month or the month after. If they cannot spare you one hour, they will squeeze you in for half an hour. And though I may find my number of 'friends' shrinking drastically, I am happy because I know that those who finally stay are the ones that are worth it.

Good luck to you and your friends. May they fight off this horrible disease with the medicines that they are taking now.

I came across your blog earlier on while looking for food bloggers online. Though I'm not sure if you are still blogging these days, I felt compelled by some strange feelings to leave my comment here.

In times of trouble and despair, you are there for Adam and Eve. It takes a special kind of person to want to dedicate precious time to helping them go through this tough period, what more if this his time is already so scarce. Adam and Eve is very lucky to have a friend like you.

As for your opinion about deleting friends, I say "why not?". If I had come across your blog say... a few years earlier, I'd say that you are one heartless person. But these days, I realise there's no point in keeping friends if they are not sincere. Though my number of friends may shrink drastically these days, I am happy to know that those who are still on my list are the real deal.

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